Dementia.
It sneaks up on you without you ever realising it was already there years before.
Im not meaning that I have it yet, though I might.
But my parents did, years before I realised it.
This is a wee story about my experiences in living with Dementia.
My dad probably suffered with dementia for years without anyone but my mum knowing.
And even my mum mightn’t have appreciated how bad it was.
That might sound strange, but dementia sufferers are geniuses at hiding it.
And if they can stay in a structured routine, they get bye.
Its only in hindsight that I realise how good my dad was at hiding it.
All his answers to questions were generic and could have answered any number of different questions, and then a quick change of subject by him.
i.e.
“How was your day dad? Did you do anything today?”
“Fine son, went for a walk round the village, what about you?”
There you go, no problem here.
It was only once my mum got dementia that I appreciated how much I had missed the clues in my dad.
Partly because I wasn’t aware of what to look for, and partly because we don’t want to see!
“How was your day mum? Did you do anything today?”
“Fine son, went for a walk around the village”.
“who did you see?” not, did you see anyone as that is too easy to just say no
“I saw slight pause Meg”
“What did you talk about?”
“bigger pause Oh you know, just the usual”
Once you know what to look for, its not so difficult to see how well these generic answers covered up the dementia, but I found that an extra one or maximum 2 layers of questions tended to be too much of a stretch in hiding it.
Not that there is anything to be gained in interrogating someone with dementia, apart from helping to confirm if there may be an issue.
My mum and dad lived a very structured life, with a specific routine for each day of the year.
This meant that the dementia wasn’t that obvious, as routine is king in managing dementia.
My first realisation that something was wrong, was when mum went into hospital for a few days and my dad who was 90 and getting infirm came to stay with us.
It was total nightmare!
Whilst my dad was fine at home, but as soon as he moved in with us he was grumpy, inconsiderate and plain and simply unreasonable.
As soon as mum was back and he went home, he returned to his usual friendly self.
However, we were now aware that something was amiss.
It began to escalate a bit.
If his hearing aid stopped working, he would get into a serious fluster and become very confused.
As soon as I took it apart, removed all the wax and got it working again, he would return to his normal self.
About a year later, mum had to go into hospital again for a couple of weeks.
Dad didn’t want to come to us, in fact was refusing, probably remembering how much he hated it last time.
So it was agreed that he would have a 2 week break in one of the local homes.
However, much as he struggled in our house, which he knew well.
Its almost like his brain went pop with the shock of losing all his structure and routine when he went into the home.
Within a week, it was obvious that he wouldn’t be coming out, and in fact it was about 6 weeks before he even realised, he wouldn’t be coming home.
When visiting him, there were good days and bad ones.
We always played rumikub in the home, a bit like gin rummy but with tiles.
My parents had played this every day for approx. 30 years and im sure the mental stimulation helped ward off dementia for a lot of years.
Some days he seemed absolutely fine when playing, other days he needed a lot of help.
He steadily deteriorated over 3 months and peacefully passed away.
With my mum on her own, we spent a lot of time with her, and after what id learned with my dad and others in the home, I was more prepared for dementia and what to look out for.
It was a lot harder with my mum, as she lived on her own and didn’t have a partner to help keep her in a steady routine.
For the first couple of years she was fine.
During this period, we arranged power of attorney for me and my niece.
Its important to do this whilst everyone is still of sound mind, as its exceedingly difficult to get once someone isn’t of sound mind and you absolutely need it!!!!!
But then her answers to questions started getting generic and we were alerted.
It wasn’t a big issue, and she managed fine, but her short term memory was definitely deteriorating, whilst her longterm memory was fine.
I spent a lot of time helping mum and learned a lot about how this tragic disease affected her.
It started with simple things.
She got a new TV with countless channels.
However, she would only watch the same 5 channels.
When I explained about catch up for example channel 33, she would be enthusiastic, but next time would say she hadn’t used it. In reality she couldn’t remember.
She would get upset that the time was wrong on the oven and insist I came over to fix it straight away.
She baked a lot less, even though she loved it.
Her main meal was often boiled ham and biscuits and cheese.
Her house whilst clean was nowhere near where it used to be. The old mum would have died of embarrassment.
We got her an appointment with the doctor to access her.
It was fascinating.
The doctor had a good general chat with her, and I was sitting there thinking what had I been worried about?
The doctor talked about some things and then asked questions about them
All stories were interlinked and often the questions went back to a story a few minutes ago.
It soon became clear that mums short term memory was far worse than I thought.
He then asked her a few mental arithmetic questions.
It was awkward numbers and sums and quick fire.
i.e
93 + 78 + 13 – 22
13 x 11
Half 53
She absolutely aced that part. The doctor looked at me, surprised how well she did.
He asked her about her cooker. How it worked!
That was a light bulb moment.
With the dementia she could no longer remember how to use the oven.
That’s why she ate biscuits and cheese so often!!
She had only been getting by, because she had a microwave that was exceptionally easy to use.
The Dr put down a drawing of a 3-dimensional cube and asked her to copy it.
It looked easy and you would have expected a child to be able to do it.
She only managed a couple of lines. That was the first time I realised it wasn’t just memory that is affected!
It was a relief all round, to get it out into the open with my mum and all the family.
Over the next 6 months, we looked after mum, whilst watching her slowly deteriorate with bowel cancer and dementia.
She saw what going into a home did to my dad and pleaded that we didn’t put her in a home.
After the experiences with my dad, we decided to do our best to avoid it, but with the knowledge that it might end up out of our control.
We left mum in her house on her own. There were a couple of times she stayed at our house for a night but I had seen what a change of house did to my dad and mum was happier in her own home with her own stuff that she had been surrounded by for decades.
Now that we had sussed that cooking was an issue, we had mum round for her tea a couple of nights a week and always popped round on the way home from work to check on her and make sure she had something to eat.
All this became a new routine.
Mum had always been social, but the worse her memory got, the more she was reluctant to mingle.
The council were great and had staff come in 2 twice a day for 15 minutes to check on her and help her.
She still loved playing Rumikub, and the mental exercise seemed to help.
She had a huge box of old photographs I would go through some every night with mum, discussing whoever was in the photos.
It would take about a week to go through them all, and then we would start all over again on a new journey of discovery the next week as by then she had once more forgotten about the ones at the bottom of the pile.
We tried to use technology to help.
We got her an alarm, that flashed up “take your pills” “its tea time” “gail comes today” etc. It was a great idea and exceedingly simple. A child would have had no problem using it. But dementia and anything new, especially technology, just doesn’t seem to mix.
We also got a big button mobile phone, with 5 names in the front so she could just press to call who ever. Again, still too difficult.
She had a couple of spells in hospital with the cancer. These were a bit harder as she was 35 miles away and out of her routine.
During these times her memory would deteriorate.
However once back home and into her routine she would return to where she was before.
She often forgot she had dementia, but in general was aware and would joke about it. Acknowledging it seemed to help her.
The dementia for the last 2 or 3 weeks was finally taking over.
She was constantly confused, getting up all hours of the day and not sure what she was doing.
And had almost no short term memory left.
The worse she got with both illnesses, the less she wanted to eat and would only eat biscuits and cheese or any overly sickly sweet desert.
It seemed to me that the more she ate sugar, the worse her dementia got. This was the same for my dad.
Disturbingly, she had about 5 days where she didn’t eat anything at all, just drank water.
At the end of the 5 days, she seemed almost back to her usual self, she remembered everyone, everything about everyone. She even complained that the weekly local news paper wasn’t delivered on Thursday.
I just agreed, as there’s nothing to be gained from arguing with someone with dementia.
A week later, I was in the local shop and they apologised for not delivering the local paper 2 weeks ago.
This had me gobsmacked!!
It was clear to me then, that much as my mum by then had literally no short term memory, all the memories were still being stored in her brain, she just wasn’t being able to access them.
Somehow, the 5 days of fasting had enabled her to access them once more. She stayed like that for a couple of days, but once she started eating her pure sugar diet again, the short term memory disappeared.
That had me thinking about some people I had seen talking to dementia suffers rudely, thinking it doesn’t matter because they will forget. But what if they suddenly start remembering again like my mum did.
Her passing was a real blessing, as we wouldn’t have been able to cope any longer and would most likely have had to put her in a home for better care.
What did I learn whilst dealing with dementia.
It sneaks up on you without you ever realising it was already there years before.
Im not meaning that I have it yet, though I might.
But my parents did, years before I realised it.
This is a wee story about my experiences in living with Dementia.
My dad probably suffered with dementia for years without anyone but my mum knowing.
And even my mum mightn’t have appreciated how bad it was.
That might sound strange, but dementia sufferers are geniuses at hiding it.
And if they can stay in a structured routine, they get bye.
Its only in hindsight that I realise how good my dad was at hiding it.
All his answers to questions were generic and could have answered any number of different questions, and then a quick change of subject by him.
i.e.
“How was your day dad? Did you do anything today?”
“Fine son, went for a walk round the village, what about you?”
There you go, no problem here.
It was only once my mum got dementia that I appreciated how much I had missed the clues in my dad.
Partly because I wasn’t aware of what to look for, and partly because we don’t want to see!
“How was your day mum? Did you do anything today?”
“Fine son, went for a walk around the village”.
“who did you see?” not, did you see anyone as that is too easy to just say no
“I saw slight pause Meg”
“What did you talk about?”
“bigger pause Oh you know, just the usual”
Once you know what to look for, its not so difficult to see how well these generic answers covered up the dementia, but I found that an extra one or maximum 2 layers of questions tended to be too much of a stretch in hiding it.
Not that there is anything to be gained in interrogating someone with dementia, apart from helping to confirm if there may be an issue.
My mum and dad lived a very structured life, with a specific routine for each day of the year.
This meant that the dementia wasn’t that obvious, as routine is king in managing dementia.
My first realisation that something was wrong, was when mum went into hospital for a few days and my dad who was 90 and getting infirm came to stay with us.
It was total nightmare!
Whilst my dad was fine at home, but as soon as he moved in with us he was grumpy, inconsiderate and plain and simply unreasonable.
As soon as mum was back and he went home, he returned to his usual friendly self.
However, we were now aware that something was amiss.
It began to escalate a bit.
If his hearing aid stopped working, he would get into a serious fluster and become very confused.
As soon as I took it apart, removed all the wax and got it working again, he would return to his normal self.
About a year later, mum had to go into hospital again for a couple of weeks.
Dad didn’t want to come to us, in fact was refusing, probably remembering how much he hated it last time.
So it was agreed that he would have a 2 week break in one of the local homes.
However, much as he struggled in our house, which he knew well.
Its almost like his brain went pop with the shock of losing all his structure and routine when he went into the home.
Within a week, it was obvious that he wouldn’t be coming out, and in fact it was about 6 weeks before he even realised, he wouldn’t be coming home.
When visiting him, there were good days and bad ones.
We always played rumikub in the home, a bit like gin rummy but with tiles.
My parents had played this every day for approx. 30 years and im sure the mental stimulation helped ward off dementia for a lot of years.
Some days he seemed absolutely fine when playing, other days he needed a lot of help.
He steadily deteriorated over 3 months and peacefully passed away.
With my mum on her own, we spent a lot of time with her, and after what id learned with my dad and others in the home, I was more prepared for dementia and what to look out for.
It was a lot harder with my mum, as she lived on her own and didn’t have a partner to help keep her in a steady routine.
For the first couple of years she was fine.
During this period, we arranged power of attorney for me and my niece.
Its important to do this whilst everyone is still of sound mind, as its exceedingly difficult to get once someone isn’t of sound mind and you absolutely need it!!!!!
But then her answers to questions started getting generic and we were alerted.
It wasn’t a big issue, and she managed fine, but her short term memory was definitely deteriorating, whilst her longterm memory was fine.
I spent a lot of time helping mum and learned a lot about how this tragic disease affected her.
It started with simple things.
She got a new TV with countless channels.
However, she would only watch the same 5 channels.
When I explained about catch up for example channel 33, she would be enthusiastic, but next time would say she hadn’t used it. In reality she couldn’t remember.
She would get upset that the time was wrong on the oven and insist I came over to fix it straight away.
She baked a lot less, even though she loved it.
Her main meal was often boiled ham and biscuits and cheese.
Her house whilst clean was nowhere near where it used to be. The old mum would have died of embarrassment.
We got her an appointment with the doctor to access her.
It was fascinating.
The doctor had a good general chat with her, and I was sitting there thinking what had I been worried about?
The doctor talked about some things and then asked questions about them
All stories were interlinked and often the questions went back to a story a few minutes ago.
It soon became clear that mums short term memory was far worse than I thought.
He then asked her a few mental arithmetic questions.
It was awkward numbers and sums and quick fire.
i.e
93 + 78 + 13 – 22
13 x 11
Half 53
She absolutely aced that part. The doctor looked at me, surprised how well she did.
He asked her about her cooker. How it worked!
That was a light bulb moment.
With the dementia she could no longer remember how to use the oven.
That’s why she ate biscuits and cheese so often!!
She had only been getting by, because she had a microwave that was exceptionally easy to use.
The Dr put down a drawing of a 3-dimensional cube and asked her to copy it.
It looked easy and you would have expected a child to be able to do it.
She only managed a couple of lines. That was the first time I realised it wasn’t just memory that is affected!
It was a relief all round, to get it out into the open with my mum and all the family.
Over the next 6 months, we looked after mum, whilst watching her slowly deteriorate with bowel cancer and dementia.
She saw what going into a home did to my dad and pleaded that we didn’t put her in a home.
After the experiences with my dad, we decided to do our best to avoid it, but with the knowledge that it might end up out of our control.
We left mum in her house on her own. There were a couple of times she stayed at our house for a night but I had seen what a change of house did to my dad and mum was happier in her own home with her own stuff that she had been surrounded by for decades.
Now that we had sussed that cooking was an issue, we had mum round for her tea a couple of nights a week and always popped round on the way home from work to check on her and make sure she had something to eat.
All this became a new routine.
Mum had always been social, but the worse her memory got, the more she was reluctant to mingle.
The council were great and had staff come in 2 twice a day for 15 minutes to check on her and help her.
She still loved playing Rumikub, and the mental exercise seemed to help.
She had a huge box of old photographs I would go through some every night with mum, discussing whoever was in the photos.
It would take about a week to go through them all, and then we would start all over again on a new journey of discovery the next week as by then she had once more forgotten about the ones at the bottom of the pile.
We tried to use technology to help.
We got her an alarm, that flashed up “take your pills” “its tea time” “gail comes today” etc. It was a great idea and exceedingly simple. A child would have had no problem using it. But dementia and anything new, especially technology, just doesn’t seem to mix.
We also got a big button mobile phone, with 5 names in the front so she could just press to call who ever. Again, still too difficult.
She had a couple of spells in hospital with the cancer. These were a bit harder as she was 35 miles away and out of her routine.
During these times her memory would deteriorate.
However once back home and into her routine she would return to where she was before.
She often forgot she had dementia, but in general was aware and would joke about it. Acknowledging it seemed to help her.
The dementia for the last 2 or 3 weeks was finally taking over.
She was constantly confused, getting up all hours of the day and not sure what she was doing.
And had almost no short term memory left.
The worse she got with both illnesses, the less she wanted to eat and would only eat biscuits and cheese or any overly sickly sweet desert.
It seemed to me that the more she ate sugar, the worse her dementia got. This was the same for my dad.
Disturbingly, she had about 5 days where she didn’t eat anything at all, just drank water.
At the end of the 5 days, she seemed almost back to her usual self, she remembered everyone, everything about everyone. She even complained that the weekly local news paper wasn’t delivered on Thursday.
I just agreed, as there’s nothing to be gained from arguing with someone with dementia.
A week later, I was in the local shop and they apologised for not delivering the local paper 2 weeks ago.
This had me gobsmacked!!
It was clear to me then, that much as my mum by then had literally no short term memory, all the memories were still being stored in her brain, she just wasn’t being able to access them.
Somehow, the 5 days of fasting had enabled her to access them once more. She stayed like that for a couple of days, but once she started eating her pure sugar diet again, the short term memory disappeared.
That had me thinking about some people I had seen talking to dementia suffers rudely, thinking it doesn’t matter because they will forget. But what if they suddenly start remembering again like my mum did.
Her passing was a real blessing, as we wouldn’t have been able to cope any longer and would most likely have had to put her in a home for better care.
What did I learn whilst dealing with dementia.
- It sneaks up on you and is subtly there years before its obvious.
- Routine seemed to me, to the most powerful medicine. As long as my parents were in their routine they were fine for years.
- Dementia suffers will go to great lengths to hide it and are geniuses at deflecting, distraction and lying.
- It can affect anyone and not always when they are old. One relative ended up in care by 60.
- It’s a very hard and frustrating illness to deal with for the sufferer and all friends and family.
- Some of the ones I met in the home, that had lost almost all memory, actually seemed quite happy as they no longer appreciated the situation, they were in.
- It can affect personalities and completely change some people. Some can become paranoid and aggressive.
- Much as I personally hate lying, lying to some of the patients in the home seemed to give them great comfort, until they forgot once more.
- Sugar seemed to make it far worse with my parents. Talking to others since, this seems to be common.
- Its very common for them to forget how to cook.
- Many can’t copy a picture of a 3D cube. If you suspect, draw one and then ask them to copy it.
- It seemed to me that all memories including short term ones were still being stored, it was accessing the memories that was the issue, but sometimes they still would be able to remember. So remember to be respectful at all times.
- There’s nothing to be gained in arguing with or correcting someone suffering with dementia. Just let it slide.
- Plan for dementia years in advance. The worst that can happen is you’ve wasted sometime.
- Get power of attorney whilst they are fine. If they end up with dementia, trust me you will need it, but its exceedingly difficult to get when someone isn’t of sound mind to give it to you.
- Establish simple and steady routines and stick to them.
- If you want to use technology to help.
- Introduce the technology years before you think you will need it so that the use is stored in longterm memory and not something that needs to be learned.
- It could be you next, think about and plan for yourself.
